ERIC ED341219: A Guidebook for Parents of Children with Emotional or Behavioral Disorders.

89 Pages·1991·4.7 MB·English

by  ERIC

DOCUUNT MUNE
EC 300 894
ED 341 219
Jordan, Dixie; And Others
AUTHOR
A Guidebook for Parents of Children with Emotional or
TITLE
Behavioral Disorders.
PACER Center, Inc., Minneapolis, MN.
INSTITUTION
McKnight Foundation, Minneapolis, MN.
SPONS AGENCY
91
PUB DATE
89p.; For the first edition, see ED 257 239.
NOTE
PACER Center, 4826 Chicago Ave. S., Minneapolis, MN
AVAILABLE FROM
5E417-1055 ($10.00).
Guides - Non-Classroom Use (055)
PUB TYPE
RFO1 Plus Postage. PC Not Available from EDRS.
EDRS PRICE
*Behavior Disorders; *Child Rearing; Educational
DESCRIPTORS
Philosophy; *Emotional Disturbances; Fathers; Federal
Legislation; Handicap Identification; *Intervention;
*Mental Health Workers; Parent Associations; Parent
Participation; *Parent Role; Parent School
Relationship; Personal Narratives; School Role; Staff
Role; Therapy
ABSTRACT
This guidebook for parents of children with emotional
or behavioral disorders includes descriptions of common diagnoses and
therapies, information on programs and services, and a description of
the roles of various mental health professionals. Introductory
sections note the extent of the problem and the importance of parents
not blaming themselves. The following seven sections provide specific
information addressing the following questions of parents: "How do I
know if my child might have an emotional or behavioral disorder?";
"What is an emotional or behavioral disorder?"; "What kinds of
programs should I be looking for or considering?"; "What types of
professionals work with children who have emotional or behavioral
disorders?"; "What are some of the different philosophies and
therapies?"; "What help can I expect from the school district for my
child with an emotional or behavioraa disorder?"; and "What is my
role as a parent in planning services for my child?". Two concluding
sections give a father's personal account and a look to the future.
Appendices list relevant organizations, suggested additional reading,
statewide parent organizations, parent training and information
projects, and the System of Care Model of the federal Child and
Adolescent Service System Program. (Includes 15 references) (DB)
***********************************************************************
Reproductions supplied by EDRS are the best that can be made
*
*
*
from the original document.
*
***********************************************************************
for parents of children
or
with emotional
behavioral disorders
US. DERARTNENT Or EDUCATION
Mar at Educational Research and rrnparmrstent
EDUCATIONAL RESotatCES INFORmAToN
CENTER (ER10
14
document has bath reproduced as
received Nom the Preon ot ortInriebon
oraprnahng IL
I" Mayor change* Noe boon ?nada to improve
reproducton Quality
Porn% ot new or confor)1 stated++) thedocu.
ment do hot heceasa rep represent officral
DER! posrhoo or pocy
MI%
THIS
"PERMISSION TO REPRODUCE
ONLY
MATERIAL IN MICROFICHE
HAS SEEN GRANTED SY
PF
RESOURCES
TO THE EDUCATIONAL
(ERIC)."
INFORMATION CENTER
PACER Center, Inc.
2
BEST COPY AYAILAII1
A GUIDEBOOK
for parents of
children with
or
emotional
behavioral
disorders
ntr
PACER Center, Inc.
3
A Guidebook for Parents of Children with
Emotional or Behavioral Disorders
was prepared by:
Dixie Jordan, EBD Project Coordinator
Paula Goldberg, Co-director, PACER
Marge Goldberg, Co-director, PACER
Karla Scott, Sue Ann Martinson, Production
Special thanks to Lii Frank and Betty Binkard for their contributions.
Betty Binkard wrote the original version of this book in 1984.
A Guidebook for Parents of Children with Emotional or Behaviond Mon;lers
is published in a Minnesota Edition, with listings of Minnesota service agencies
and organizations, and in a National Edition.
Views expressed in this guidebook do not necessarily reflect those of any funding source.
Reviewers:
Barbara Amram
Barbara Sorum
Frank Wood
Gordon Wrobel
This book was funded in part by a grant from the McKnight Foundation.
PACFR Center is funded by grants from the Office of Special Education
and Rehabilitation Services, US. Department of Ethwation; through foundation and corporation grants;
and through individual contributions.
PACER Center, Inc., 1991. No part of this material may be reproduced without
written permission from PACER Center, Inc.,
4826 Chicago Avenue South
Minneapolis, MN 55417-1055
[phone]
CONTENTS
Lan
Introduction
1
Who Do We Blame? What Good Does It Do?
5
Matt's Story
7
Recommended Reading
13
How Do I Know If My Child Might Have
an Emotional or Behavioral Disorder?
15
What Is an Emotional or Behavioral Disorder?
21
What Kinds of Programs Should I Be
Loo idng for or Considering?
25
What Types of Professionals Work with Children
Who Have Emotional or Behavioral Disorders?
31
What Are Some of the Different
Philosophies and Therapies?
35
What Help Can I Expect from the School District for My
Child with an Emotional or Behavioral Disorder?
39
What Is My Role as a Parent in Planning
Services for My Child?
59
A Fathees Story
63
Looking at the Future
67
References
69
Appendix A: Organizations Concerned with
Children's Mental Health
73
......... .................
Appendix B: Additional Reading
74
........ ..... . . .. ...
Appendix C: Statewide Parent Organizations
75
Appendix D: Parent Raining and Information (PTI) Projects
77
Appendix E: CASSP System of Care
82
A Guidebook for Parents of Children with
Emotional or Behavioral Disorders
by the
was prepared
EBD Project of PACER Center
(Parent Advocacy Coalition
for Educational Rights).
nib(
PACER Center, a coalition of nineteen
disability organizations, is founded on
the concept of Parents Helping Parents
and serves as the parent training and
information center for Minnesota.
PACER's mission is to improve and
expand opportunities that enhance the
quality of life for children and
disabilities.
young adults with
When the first edition of this guidebook was written in 1984, there were not many
positive statements to be made regarding the status of children and adolescents with
serious emotional disorders (SED).
A 1981 study (Gould, et RI.) estimated the prevalence rate of emotional problems in
children and adolesmnts to be nearly twelve percent. The Gould figures, a compilation
of a number of national studies, haw been found to be perhaps a conservative estimate.
The study suggests that:
One child in eight (11.8 percent) has an emotional problem that
limits his or her capacity to function.
One child in twenty has a "severe emotional disorder."
15 to 20 percent of all children come from groups which are
considered at higher risk of developing emotional disorders.
In her landmark book published in 1984, Unclaimed Children: The Failure of Public
Responsibility to Children and Adolescents in Need of Mental Health Services, Jane
Knitzer of the Bank Street College of Education reported that two-thirds of all children
with serious emotional disturbances in the United States were not receiving the services
they needed. Many others received inadequate, inappropriate or unnecessarily
restrictive care, sometimes .11 state hospitals. Further, although many of these children
required the interventions of agencies and systems other than mental health (social
services, health, special education, vocational, corrections, etc.), few states had any
organized planning process for coordinating such services. (A second book by Jane
Knitzer and the Bank Street College, At the Schoolhouse DOOT: An Examination of
Programs and Policies for Children !Nth Behavioral and Emotional Problems, 1990,
highlights how some school and mental health agencies are now addressing the complex
needs of children and adolescents with emotional or behavioral problems.)
Tbday, thanks in large measure to Unclaimed Children and to the advocacy efforts of
parents and professionals, there are a number of state and federal initiatives to develop
and coordinate services to children with serious emotional disorders (SED). The best
known and most successful of such initiatives is a small federal program known us the
Child and Adolescent Service System Program, or CASSP.
Launched in 1984 by the National Institute of MerAal Health, CASSP developed a
model of coordinated services that is child-centered, family-focused, and
community-based: Children are to be served, whenever possible, in their own homes
and communities, and families should receive the necessary support services to help
them cope with the stresses of caring for their child. In order for systems to respond
1
7
appropriately to the needs of children, CASSP encourages that families be included in
the planning and implementation of such service systems and that they act as a voice
to state policymakers to support the development of appropriate services. The CASSP
Project offers financial and technical assistance to states to implement a process
directed to making necessary administrative, legislative, budgetary, and programmatic
arrangements to develop and coordinate services to children with SED. Although all
fifty states have now received CASSP grants, some states and communities had already
undertaken system changes as a response to the issues outlined in
Unclaimed Chikken
and used their federal CASSP funds to expand dime efforts.
One of the most promising initiatives for addressing the unmet mental health needs of
children has come from families themselves. Parents, once blamed for their child's
emotional difficulties, are assuming an increasing role in the development and
implementation of an appropriate mental health program for their child.
Support Groups
Self-help groups are emerging to provide support and information to families who are
dealing with extraordinarily difficult day-to-day problems or who are still struggling
with feelings of shame or blame for their child's disorder.
Parent Networks
Currently, fifteen parent groups from different states have federal grants to aid in the
development of statewide organizations or networks of parents whose children have
emotional disorders. The groups provide support for families and advocacy for
improved services for children and adolescents.
The National Alliance for the
Mentally Ill (NAMI)
The National Alliance for the Mentally Ill, a gassroots organization of parents whose
primarily adult children have mental illnesses, has established a Child and Adolescent
Network (NAMICAN) to provide support and information to families who have
children and adolescents with biologically based mental illness.
Federation of Families for Children's
Mental Health (FFCMII)
A national parent organization has emerged within the past several years, with an
exclusive focus on the unique mental health needs of children and youth with
emotional, behavioral or mental disorders and their families. The Federation of
Families for Children's Mental Health, established in 1989 to mobilize the energies and
2
talents of families in providing a national voice for children with emotional or
behavioral disorders, is rapidly gaining membership and a national following.
Parent Training and Information
Centers (PHs)
Nearly sixty Parent 'Raining and Information Centers exist nationally to provide
information and guidance to parents of children rrith all disabilities (including
emotional disorders) about special education service& Public Law (PL) 101476, the
Individuals with Disabilities Education Act (IDEA), provides children with disabilities
and their parents specific rights and responsibilities in planning an education& t
program. The role of a PTI is to assist parents in understanding their unique role in
phtnning and evaluating their child's educational program, and in resolving differences
when parents and schools disagree. PACER Center, the publisher of this book, is the
VT1 which serves Minnesota parents.
The addresses and telephone numbers for all the preceding resources are listed in
Appendices C and D of this book.
Family Choices
In general, the thrust of providing mental health and other services to children with
serious emotional/behavioral disorders or mental illnesses during the next decade will
focus on the importance of normalized settings, such as the child's home, school, and
community, over agency or institutional placements, whenever ponible. Respect for
family choices and priorities is integral to the success of community-based services for
children and adolescents.
Though there are still many gaps in services available, there are also many fine programs
and services in place and numerous devoted, accomplished and caring professionals
who work with children. This book has been prepared for parents who wish to better
understand the topic of emotional/behavioral disorders and the types of treatment
programs that serve children and youth and have available the kind of information they
need to make informed decisions.
NOTESNOTESNOTES
-
^
4
_
I 0